Sterile Talc for pleural effusions

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mrsquickgt
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Date Joined Mar 2009
Total Posts : 27
   Posted 3/29/2009 11:17 AM (GMT -7)   
Has anyone had any luck with Talc powder for pleural effusions?
 
My mom is at the point of being drained every 4 days, even AFTER having the TIPS procedure 2 times. She is only getting 1 1/2 days of relief after a thoro...it's pretty frustrating.
 
I'm at the point of looking for something else to try and bandaid this problem until we get a new liver.
 
TIA
Margaret

hep93
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Date Joined Jul 2005
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   Posted 3/29/2009 12:46 PM (GMT -7)   
Hi, Margaret!  I had never heard of this so did a Google search.  Was this suggested by her doctor, or something you came upon doing research? 
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mrsquickgt
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Date Joined Mar 2009
Total Posts : 27
   Posted 3/29/2009 1:37 PM (GMT -7)   
Research. Her doctor doesn't like to give any kind of solutions to problems. Just sugar coat things and say..."I can't wait til you get a new liver!"

I've read that there has been some decent success with this and at this point her back is starting to look like a pin cushion and they are not draining as much as they need to becuase the lungs keep collapsing.

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/29/2009 4:44 PM (GMT -7)   
I would directly ask him about the possibility of doing this and if he would be willing to do it.  I read the info on several sites and it does seem like an option.  If nothing else, her doctor will know that you are knowledgeable and informed.  wink
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mrsquickgt
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Date Joined Mar 2009
Total Posts : 27
   Posted 3/29/2009 7:44 PM (GMT -7)   
I've done all the research on it and it is FDA approved for this purpose.

My sister is back in the ER with her tonight. She spent the weekend with me and got worse as the day progressed today. They have done a chest and stomach x-ray but all the doctors are in a transplant so all she has seen is the ER doc. They are putting her on a CPAP as the regular method of oxygen isn't helping and her O2 is lingering around 87. Veins aren't coperating so no blood work yet.

Seems as though she has hidden alot of her problems from today from me as my sister just called and broke down to me on the phone over how bad she is. I have two small children (2 and 1) so I guess she figured that if she kept it from me it wouldn't be real? I don't know.

I don't understand how a CPAP will help her breathe when she is so full of fluid.

hep93
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   Posted 3/29/2009 8:26 PM (GMT -7)   
I'm sorry that your mom had to return to the ER tonight.  It would be best if they admit her so her doctor can see her.  I suggest that you get the whole family to confront the doctor or set up a meeting for some straight talk.  Find out if a transplant is really a possibility or if Hospice should be called in.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 3/30/2009 5:06 AM (GMT -7)   
They did admit her and pulled 3 liters from her. She is small...5'2" 170. That is small for her. Most of her weight is in her mid region. The rest is just skin.

I emailed her doctor last night and we will see what today brings.

Thanks hep93 for the responses. Sometimes it just feels nice to know that someone out there will chat about it. :)

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/30/2009 9:58 AM (GMT -7)   
You're welcome, Mrs. Q., and please keep us posted.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pscwife
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Date Joined Dec 2008
Total Posts : 302
   Posted 3/30/2009 4:49 PM (GMT -7)   

Margaret,

 

I don’t mean to scare you, but this is precisely the reason I met the Director of Transplant Surgery at Florida Hospital.  My husband had pleural effusion on the right side of his chest.  He had an accident in October and I learned that his right lung was collapsed.  They drew 3 ¾ liters of fluid off him.  Then he was admitted to the hospital in November where they drained 4 ½ liters of fluid.  They then put a chest tube in him and within 6 days, they drained another 10 liters of fluid via this chest tube.  He was so dry he went into hepatic coma.

 

I had an absolute fit.  I had done the same research as you have.  The procedure you are referring to is called Thoracoscopic Talc Pleurodeses.  It made sense to have the thoracic surgery with aerosolized talc.  I figured that if they would stop the acites fluid from getting into the chest cavity, the breathing difficulties would be resolved and we could just carry-on with the normal cirrhosis issues.

 

With this knowledge, I exploded on the ICU.  I demanded to see the pulmonary doctors and demanded a consultation with a thoracic surgeon.  After chewing out more than 3 doctors, in walked the Director of Transplantation.  He was arrogant and insisted I not allow my husband to have the procedure done.  However, he seemed unwilling to explain why.  We got into one hellacious argument.  He finally explained that it would cause liver deterioration and prevent him from getting a transplant.  He said he had a man upstairs that was dying from the very same procedure.  He did agree to have the chest tube removed.  With saline fluids, my husband came out of the coma within 3 hours.

 

I did get my consultation with the thoracic surgeon.  He admitted that I had received good advice.  The recovery period for the talc procedure was up to 15 days.  The scaring within the chest cavity can be severe and prevent ANY future surgery, including transplant surgery.  I did not find any information on the Internet that discussed the aftermath of the talc procedure.

 

All I can say is that you really need to understand exactly what the risks are.  By all means, demand answers.  The Director of Transplantation admitted that I saved my husband’s life by my outburst.  The pulmonary doctors had all but given up on him.  Had I not spoke up, he would have slipped away.  I was fortunate that the Transplant Director accepted my challenge to make my husband better.  He received a liver transplant on January 21st and continues in his recovery.

 

I hope this helps.  Best of luck to you.  You will be in my prayers.

 

Penny

 

 


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 3/30/2009 7:12 PM (GMT -7)   
Hello Margaret and welcome to HealingWell. I am sorry that your mom has this disease.
I have no experience with Tips or the pleural effusion as my husband didn't need either. Luckily they were able to control his ascites and edema with Lasix and Spironalactone along with limiting his sodium and fluid intake.

I commend you for getting educated. If a person doesn't know about all the options ....sometimes the doctors fail to tell them.

Connie and Penny gave you some good information.....with your mom's life at stake don't be afraid to step on any toes.......

Good luck and take care..........thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 3/30/2009 8:16 PM (GMT -7)   
Welcome to the forum Magaret. I am so sorry to hear that your mother is doing so badly. This disease can be so very overwhelming. I will include you and your family in my prayers.
Butterflythree
 
There is always hope!


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 3/31/2009 5:03 AM (GMT -7)   
Penny
 
Thank you for that information. You're right...they don't discuss any of that on the internet that I've come across. Just that recurrence was minimal of the PE and that they were having success.
 
She saw one of the 3 doctors in the group yesterday, after he was paged, however neither my sister nor I were there and it was just my grandmother and mom. It's like having children. Before my sister left the hospital yesterday she told my mom 10 times to call her AS the doctor got there. Then had the nurse write in her chart to call her.  What happened? Doctor comes and no phone call nono
 
He told her that her white blooc count is elevated so starting her on 2 antibiotics. They were going to do a ultrasound of the TIPS and some urine cultures. That's all she, and my gma, could remember. She did ask him about the Pleurodeses and he said that they haven't had the greatest success with it and really like to keep it as the last option.
 
Mom feels, as we all do, that we are out of option at this point. She told me that she really felt like Sunday night was it for her. She couldn't breathe by the time they got to ER. Not even her shallow breathing.
 
I feel like she is really bad off until I read things here that others have gone through. Makes me feel like we still have so far to go. We've escaped coma, ICU, and having to call Hospice. We are at the point of having to be admitted every other week and stay for 3-4 days. At some point something has to give.
 
Thanks to Pink grandma and Butterfly for the words of encouragement. It really is appreaciated as every little bit helps right now.
 
Margaret 

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/31/2009 5:01 PM (GMT -7)   

Margaret,

 

The “doctor” watch is probably one of the most frustrating experiences when a loved one is in the hospital.  Some doctors come in the morning, some in the afternoon, the rest pop in at all different hours.  If you miss them, you have to wait until the next day. 

 

I ended up having someone that I could count on in the room with my husband 24/7.  He was hospitalized a total of around 75 days.  It was tough, but I had great family support.  I would get so angry when I would run down to the cafeteria to grab a sandwich (and bring it back to the room) only to find out that a doctor had already visited and left.  I swore the room was under surveillance!   

 

It got better.  They realized that if they didn’t speak with me when they visited, I would run them down on the floor.  When one did come in the room, I learned to walk behind them and shut the door.  Then I would block the hallway to the door until all of my questions were answered. 

 

Something else to consider . . . the fact that your Mom was admitted for pleural effusion means that she is under the care of the pulmonary doctors.  She is probably seeing a hepatologist as well, but understand that the pulmonary doctors are calling the shots.  Harvey’s hepatologist didn’t have the backbone to stand up to the pulmonary doctors.  He agreed with me that the chest tube was not helping, but he wasn’t about to tell the other doctors how to manage his course of care.  It was the Director of Transplants that started calling the shots after my outburst.  I have the utmost respect for him now.

 

What sort of liver disease does your Mother have?  Is she on the transplant list?  What is her MELD score?  How many people with her blood type are on the transplant list at your center? 

 

Keep the faith, you will be amazed at how much the human body can endure.  My husband told me on many occasions that he wasn’t going to make it.  I would remind him of how far he’s come and not to give up. 

 

Penny


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/31/2009 6:25 PM (GMT -7)   

Oh, by the way.  Speak with the hepatologist about doing a paracentesis (abdominal drain) versus a thoracentesis (chest drain) when you Mom is full of fluid. 

 

You may already know that acites fluid comes from the circulatory system.  The liver is not producing the necessary proteins to keep the fluid within the vessels and they essentially sweat.  The fluid usually accumulates in the abdominal cavity but can sometimes accumulate in the chest cavity.  In most cases of pleural effusion, the acites fluid from the abdomen seeps up through pours and/or defects in the diaphragm.   This is why a Thoracoscopic Talc Pleurodeses seems to make sense.  After a drain (either a thoracentesis or a paracentesis) procedure, Albumin (human protein) is usually administered along with diuretics to help keep the fluid from re-accumulating.  Care must be taken to avoid drying out the patient. 

 

The pulmonary doctors always came in early in the morning; usually around 7:00am.  The hepatologist came in the afternoon after seeing patients in the Transplant Clinic.  The pulmonary doctors are not concerned with liver disease as this is not their specialty.  They would order a thoracentesis and it would be done an over before the hepatologist would arrive.  The Director would be visibly upset when he found out the thoracentesis was done. 

 

The glass bottles that the fluid is collected in are sealed under pressure.  The fluid is drained via a tube with a needle at both ends.  The patient is punctured and then the rubber seal on top of the bottle.  This creates a vacuum or siphon drawing the fluid into the bottle.  When the fluid is drawn off the chest, it is also pulling fluid from the abdominal cavity.  The abdominal fluid is drawn through the diaphragm into the chest and out the tube (precisely the problem causing the pleural effusion).  In many cases, the acites fluid in the abdomen can become infected.  If this is the case, the thoracentesis draws the infected fluid through the chest cavity and putting the patient at risk for pneumonia.

 

It seems reasonable to me that the fluid should be drawn back down into the abdomen from where it came, then out a tube. 

 

Also, encourage you Mom to use the Incentive Spirometer as often as she can.  This does help.

 

Penny


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/31/2009 7:12 PM (GMT -7)   
Penny, you are so much more knowledgeable than I about the draining issues.  However, I'm very familiar with the incentive spirometer and you are 100% correct.  I have a tendency to chest congestion and pneumonia, having had pneumonia 3 times in the past and bronchitis more times than I can count.  Even after discharge post surgery, I would use the spirometer at home to get mucus up, and continue to use it until my lungs were absolutely clear.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 3/31/2009 7:23 PM (GMT -7)   
Well after an all day visit with her at the hospital today, and speaking to doctor "A" out of the group of 3, I do feel better about the fact that they simply do not know what is wrong.

The short of the long of it is the new shunts that they switched to 4 years ago has never caused a problem in any of the patients that they have given them to for TIPS. She is the FIRST case that has reacted in the manner that she has. Basically she is clotting up strictly at the area of the shunt where the two veins are attached and then inside the shunt itself thus causing a blockage and the snowball effect. Fluid build up, can't breathe, and a thoro.

They are trying to determine now WHY she is clotting just in those areas as her PT and INR are either good or to low. Her blood is testing thin as it is. They were also going to try and do a liver biopsy, as it has been quite some time since she has had one, but the interventionalist Radiologist said it was too risky from the angle he was in doing to the TIPS.

She had filled back up with fluid 24 hours after they took 3 liters so that discouraged her pretty badly. The hepatologist doctor this morning told me that the diruetics aren't working and this TIPS isn't working. He wants to find a solution to the blood clots and watch this slow progression of the HRS.

After the procedure this evening she went from the stretcher, to the bathroom (5 steps), and then to her bed (6 steps) and she was just as she was when we took her to ER on Sunday. Her 02 was 85 so they paged the doctor, started the CPAP, and working on getting that up.

We will get the liver biopsy done while she is there. She's already there and it's been quite some time since she had one. He did tell me this morning he was going to consider it to check for malignancy. My sister and I are not sure if having liver cancer would put her on the top of the list or kick her off. Something we have to ask.

Unfortuneatly, her MELD is a 9. :( She has Autoimmune Hepatitis. I'm not sure how many on the list have her blood type and yes, she is BACK on the list for the 2nd time.

Hopefully third time is the charm and this will work. They expanded the shunt diameter from 8mm to 10mm and busted the clots to where they would dissolve. However, being that it has happened twice now I'm having a hard time thinking it won't happen this time.

Only time will tell.

mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/1/2009 5:41 AM (GMT -7)   
I'll be headed back up there today. They put her in ICU overnight. Seems as though the fluid on her lungs has gone higher than it ever has before comparing to past x-rays. It's up to her coller bone. My grandmother stayed overnight with her so she is up there by herself to handle this.

Talk to you guys when I get home. Thanks for the continued prayers and thoughts.

Margaret

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 4/1/2009 8:10 AM (GMT -7)   
Hi, Margaret just want to reply to your comment:

"My sister and I are not sure if having liver cancer would put her on the top of the list or kick her off. Something we have to ask."

At my husband's transplant center, liver cancer would add points to his meld score if..............there wasn't over 3 lesions and none of them were over so many cm. I can't remember what the cm was now.

If the cancer multiplied too much or grew too big, or spread to other parts of the body it would be cause not to make the transplant list or be taken off the list as they did in my husband's case.

Each transplant center may have slightly different criteria for being listed so ask the Hepatologist that the hospital that they would be doing the transplant if she was listed.

Lot's of thoughts and prayers......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/5/2009 3:43 PM (GMT -7)   
Thought I would update:

Been 7 days now in the hospital and she is very weak and tired. They drained her again today and got 3.5 liters. We have a new issue, Antiphospholipid Syndrome, which explains the clotting problem we are having with the TIPS. They have her on two blood thinners now but concerned with the portal gastropothy that she has. Good news was her varices were in check and did not require any more banding.

Kidney function is holding up but her spirits are down. She doesn't turn the tv on and just lays in bed. Too weak to get up and walk. They have stopped giving her anything via IV because they are afraid it is going straight to her lungs.

No idea when she will get to come home or what they plan on doing next. We are on a "wait and see" mentality. I know she is tired of being up there...she's tired of being sick, really. You can hear it in her voice.

I wish we could be given some sort of timeline, frame, something. I haven't been told that we need to call Hospice and I know that if we say something to her about it she will just completely lose any hope. I looked on our center transplant data and we have 172 people waiting for a liver with 40 of them being in her MELD score range and her age group. Have no clue, really, how that effects us or pertains to us getting a liver.

Thanks for the support

Margaret

mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/5/2009 3:45 PM (GMT -7)   
Oh, I forgot, last week the hepatologist mentioned that if the shunt didn't work after this last revision...which it isn't then there were 3 options.

1. Surgical shunt from the stomach to large intestine.
2. Check the diaphram for perforations.
3. The talc pleurodesis.

Not sure if those 3 options now hold up with the new blood disorder. Guess we'll hear more about that on Monday.

-Margaret

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/7/2009 8:21 PM (GMT -7)   

 

Margaret,

 

I know you must be pulling your hair out.  If I had to chose one of the options you mentioned, I would go with the least invasive; 2. Check the diaphragm for perforations.  If there are perforations over 2mm, these can be stapled or sutured orthoscopically. 

 

You mentioned 40 individuals with a similar MELD score range . . . don’t forget to filter the list down to blood type.  Then see how many individuals remain on your list.  Also, make sure you are looking at Candidates not to include Registered.  People are put on and pulled off the lists all the time depending on their condition.

 

I wish I had more time, but I really need to turn in.  I’ve gotta get an early start at work tomorrow.

 

You are in my thoughts and prayers.  I will check back soon.

 

Penny

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